Perspectives of Japanese patients on psoriatic disease burden: Results from "Psoriasis and Beyond," the Global Psoriatic Disease Survey

被引:1
作者
Okuse, Masanori [1 ]
Soekawa, Masayuki [1 ]
Itakura, Asako [2 ]
Kawamura, Taisuke [2 ]
Mburu, Sicily [3 ]
Frade, Susan [4 ]
Okubo, Yukari [5 ]
机构
[1] Japan Psoriasis Assoc, Tokyo, Japan
[2] Novartis Pharm KK, Tokyo, Japan
[3] IFPA, Stockholm, Sweden
[4] Novartis Pharm AG, Basel, Switzerland
[5] Tokyo Med Univ, Dept Dermatol, Tokyo, Japan
关键词
awareness; comorbidities; psoriatic disease; quality of life; treatment satisfaction; MULTINATIONAL ASSESSMENT; MANAGEMENT;
D O I
10.1111/1346-8138.17424
中图分类号
R75 [皮肤病学与性病学];
学科分类号
100206 ;
摘要
Psoriatic disease (PsD) is a chronic disease affecting skin (psoriasis) and joints (psoriatic arthritis, PsA) that has a significant impact on patients' quality of life (QOL). We report findings from the Japanese subgroup of patients included in Psoriasis and Beyond: The Global Psoriatic Disease Survey, a cross-sectional, quantitative online survey of patients with self-reported, healthcare professional (HCP)-diagnosed, moderate-to-severe plaque psoriasis, with or without PsA. Eligible patients who were recruited online completed a 25-min internet-based survey in Japanese. We assessed patients' understanding of the systemic nature of PsD, disease burden, perception towards their HCPs, treatment expectations, and satisfaction with care. Of the 148 patients, 74% were females. In total, 65% of patients were aware of the systemic nature of their disease. A minority of patients (27%) were aware that PsA was related to their psoriasis, and 30% and 42% of patients were unaware of any manifestations and comorbidities, respectively, related to PsD. Overall, 21% of patients reported that their disease has a "very large" to "extremely large" impact on their QOL (assessed by Dermatology Life Quality Index score), while the majority (61%) reported a "small" effect or "no effect" at all on QOL. Patients experienced stigma and discrimination and had a negative impact on relationships due to PsD. More patients with psoriasis and concomitant PsA (66%) were satisfied with their current treatment than those with psoriasis alone (46%). Overall, 41% of patients were not involved in deciding their treatment goals. These results suggest that Japanese patients may not be fully aware of the systemic nature of PsD, its manifestations and comorbidities. While these patients were somewhat satisfied with their current treatment, they were only occasionally consulted in deciding treatment goals. Policy measures are required to address the stigma and discrimination experienced by patients. Increased patient participation in their care supports shared decision-making and enhanced treatment outcomes.
引用
收藏
页码:1298 / 1309
页数:12
相关论文
共 50 条
[41]   A clinical case of severe disease burden: an erythrodermic psoriatic patient treated with secukinumab [J].
Galluzzo, M. ;
D'Adamio, S. ;
Campione, E. ;
Mazzilli, S. ;
Bianchi, L. ;
Talamonti, M. .
JOURNAL OF DERMATOLOGICAL TREATMENT, 2018, 29 :17-20
[42]   Patient global assessment in psoriatic arthritis - what does it mean? An analysis of 223 patients from the Psoriatic arthritis impact of disease (PsAID) study [J].
Talli, Sandra ;
Etcheto, Adrien ;
Fautrel, Bruno ;
Balanescu, Andra ;
Braun, Jurgen ;
Canete, Juan D. ;
de Vlam, Kurt ;
de Wit, Maarten ;
Heiberg, Turid ;
Helliwell, Philip ;
Kalyoncu, Umut ;
Kiltz, Uta ;
Maccarone, Mara ;
Niedermayer, Dora ;
Otsa, Kati ;
Scrivo, Rossana ;
Smolen, Josef S. ;
Stamm, Tanja ;
Veale, Douglas J. ;
Kvien, Tore K. ;
Gossec, Laure .
JOINT BONE SPINE, 2016, 83 (03) :335-340
[43]   Access to Health Care in Patients With Psoriasis and Psoriatic Arthritis Data From National Psoriasis Foundation Survey Panels [J].
Bhutani, Tina ;
Wong, Jillian W. ;
Bebo, Bruce F., Jr. ;
Armstrong, April W. .
JAMA DERMATOLOGY, 2013, 149 (06) :717-721
[44]   Ex vivo cytokine production in psoriatic disease: Towards specific signatures in cutaneous psoriasis and peripheral psoriatic arthritis [J].
Larid, Guillaume ;
Delwail, Adriana ;
Dalle, Thomas ;
Vasseur, Philippe ;
Silvain, Christine ;
Jegou, Jean-Francois ;
Morel, Franck ;
Lecron, Jean-Claude ;
Gervais, Elisabeth .
FRONTIERS IN IMMUNOLOGY, 2022, 13
[45]   Managing comorbid disease in patients with psoriatic arthritis [J].
Husni M.E. ;
Mease P.J. .
Current Rheumatology Reports, 2010, 12 (4) :281-287
[46]   Patients' Perspectives and Experience of Psoriasis and Psoriatic Arthritis: A Systematic Review and Thematic Synthesis of Qualitative Studies [J].
Sumpton, Daniel ;
Kelly, Ayano ;
Tunnicliffe, David J. ;
Craig, Jonathan C. ;
Hassett, Geraldine ;
Chessman, Diana ;
Tong, Allison .
ARTHRITIS CARE & RESEARCH, 2020, 72 (05) :711-722
[47]   Exploring the Quality of Communication Between Patients with Psoriatic Arthritis and Physicians: Results of a Global Online Survey [J].
Coates, Laura C. ;
Azevedo, Valderilio F. ;
Cappelleri, Joseph C. ;
Moser, Jade ;
Eder, Lihi ;
Richette, Pascal ;
Weng, Meng-Yu ;
Silva, Ruben Queiro ;
Garg, Amit ;
Majjhoo, Amar ;
Griffiths, Christopher E. M. ;
Young, Pamela ;
Howland, Samantha .
RHEUMATOLOGY AND THERAPY, 2021, 8 (04) :1741-1758
[48]   Influence of disease phase on embitterment and emotional dysregulation in psoriatic patients [J].
Almeida, V. ;
Constante, D. ;
Leite, A. ;
Almeida, I. F. ;
Rocha, J. C. ;
Sa, R. ;
Teixeira, M. ;
Teixeira, A. .
PSYCHOLOGY HEALTH & MEDICINE, 2021, 26 (02) :242-259
[49]   Evolution of Patient Perceptions of Psoriatic Disease: Results from the Understanding Psoriatic Disease Leveraging Insights for Treatment (UPLIFT) Survey (Oct, 10.1007/s13555-021-00635-4, 2021) [J].
Lebwohl, Mark ;
Langley, Richard G. ;
Paul, Carle ;
Puig, Lluis ;
Reich, Kristian ;
van de Kerkhof, Peter ;
Wu, Hsiuan-Lin ;
Richter, Sven ;
Jardon, Shauna ;
Gisondi, Paolo .
DERMATOLOGY AND THERAPY, 2022, 12 (01) :79-79
[50]   HIGHER COMORBIDITY BURDEN IN EARLY PSORIATIC ARTHRITIS AS COMPARED TO EARLY RHEUMATOID ARTHRITIS: CLUES FOR PATHOGENESIS OF PSORIATIC DISEASE [J].
Ishchenko, A. ;
Lories, R. ;
Verschueren, P. ;
De Vlam, K. .
ANNALS OF THE RHEUMATIC DISEASES, 2023, 82 :45-45